Need for Nuance in Women’s Reproductive Health
A few years ago, the field of obstetrics experienced a breakthrough in prenatal screening that comes along only rarely.
Most obstetricians rejoiced; what could be better than one more reliable piece of data that would help women make informed choices about their reproductive health? The test has been embraced by clinicians in Western Europe, Australia, and the US. But it remains unavailable to Indian families for one reason: In revealing data about a fetus’s chromosomal makeup, the test also reveals its sex.
But would it have to?
When a man and woman’s genetic materials combine to form the genetic seeds of a new person, any number of things can go wrong. In fact, approximately 25% of diagnosed pregnancies end in miscarriages, the vast majority of which happen simply because the chromosomal makeup of the fetus-to-be renders it unviable.
There are, however, many chromosomal abnormalities that may allow a pregnancy to progress past the first few weeks, but would still result in a stillborn later, or a child who cannot survive very long outside the womb, or a child with physical or cognitive disabilities severe enough to significantly impact quality of life long-term.
This is what the new prenatal screening method, called the Non-Invasive Prenatal Screening (marketed as the Harmony and MaterniT21 tests), is able to reliably gauge. NIPS identifies the likelihood of the three most common chromosomal abnormalities — Trisomy 21, 18, and 13 — in fetuses as early as Week 9 of pregnancy.
NIPS is an important option for pregnant women for two reasons. First, as a more reliable test, it enables expectant parents to make what is already a heart-wrenching and complex decision with a little bit more evidence and data. They are less subject to a clinician’s own biases about whether or not to terminate a pregnancy, and they are no longer making decisions based on conjecture and vague probabilities.
(For the purposes of this article, we’re leaving aside the debate about the morals or ethics of choosing to terminate a pregnancy based on knowledge about a chromosomal abnormality. We’re assuming that more information about the health and well-being of a fetus is always a good thing, and that informed parents have a right to make whatever decisions – assuming they’re legal – are appropriate for them and their families.
We are also not arguing the test be mandatory, only that it be available; parents should always be free to reject any genetic screening if their ethics conflict with it.)
Currently, prenatal screening for chromosomal abnormalities relies on the measurement of nuchal translucency at 12 to 14 weeks via sonogram, along with a triple marker blood test. These practices can serve as warning signs, but they are far from diagnostic. Depending on the results, and the clinicians guiding her, a pregnant woman will receive varying advice and probabilities that the fetus will not develop normally. This is an unsettlingly vague set of circumstances from which to make a decision about the future of a pregnancy. NIPS, and the clearer picture it provides, can only be described as advancement.
Second, the two to three weeks between the NIPS result and current prenatal screening methods have a huge impact on the way that pregnancy might be handled. Different jurisdictions around the world have different rules about how far into a pregnancy it can be terminated, so an earlier result from NIPS is likely to allow more women complete freedom of choice over the future of their pregnancies.
But also, should a woman decide to terminate her pregnancy based on the results of such a test, the procedure she would undergo at 9 to 10 weeks after NIPS is significantly easier than the procedure she would undergo at 12 to 14 weeks after current prenatal screening practices. It could mean the difference between general and local anesthesia, or between an outpatient and inpatient procedure; cost, recovery times, and emotional impact would also differ substantially.
NIPS is not without detractors, who argue it’s not definitively diagnostic and has been known to create false positives. However, NIPS is currently the best shot we have at determining the presence of some life-threatening or life-altering abnormalities. All in all, it’s hard to argue that more information, earlier, is a bad thing.
And yet this test, which is arguably one of the biggest reproductive health breakthroughs of recent years, is banned in India.
We’ll not critique blind adherence to the Pre-Conception and Pre-Natal Diagnostic Techniques Act here; efforts to protect female children are commendable. What we will critique is the missed opportunity to appreciate nuance and explore creative solutions. Why not implement a procedure whereby NIPS results are delivered gender-blind, the way sonograms – which can also reveal the sex of the fetus – currently are? Or work with the tests’ makers to determine a new reporting mechanism that simply omits sex entirely?
By not seeking this middle ground, Indian lawmakers are denying parents information that could dramatically impact their physical and emotional well-being and future choices. The irony of this failing is that only by upholding and supporting the reproductive rights of women can we truly claim to be a society that advances the rights of its unborn girls.